Onset story

Day 6 of 2015 #RABlog week is about Onset stories, the prompt reads :tell us your stories about your diagnosis, what were you thinking, feeling or when did you first know something was wrong?

Onset

This is the third blog of the week I have really been looking forward to writing. I wish I could point to an event a time or a turning point that I could say yes I now have RA. I cannot do that. I suppose I need to do so because I have that with diabetes. With Diabetes there I was at Disney World, I got sick and within days I was back in Indiana in the hospital. I had a beginning and the fact I was released from the hospital on my birthday gave me a fixed date I know. I point at my 17th birthday and say that was the day. There was before and after. There is comfort in before and after.

With RA there is no such event, time, or place. I had RA long before I was diagnosed. There were signs along the way that helped me know I was not feeling well. My back hurt terribly, I almost could not move. It was the onset of Ankylosing Spondylitis, but I no idea about that.

Memorable happenings

I have two points I recall which marks the start. The first and most important was when my son purchased a new car. It was a beautiful 1999 Pontiac Trans Am sports car. It was a magnificent car, the kind young men buy to show off who they want to be. With less than 40 miles on he brought it to our house to show off. He got all the bells and most whistles. He researched the purchase for weeks to get the proper combination of power and amenities. It was a young man’s dream car and he was so proud of his purchase, as he should have been.

Physically, I could not sit in the car to go for a ride. I wanted to bend myself into the car to see how it felt driving around.  I did not know why, sitting seemed like a simple thing, put your legs in and let’s go. I was at a complete loss for words about why I could not. In those days I could not verbalize why. This is one of the most difficult days in my life.  Knowing I disappointed my son is difficult beyond words.  It is something I will never get over.

A few months later I took my younger son for a college visit. This was not just any college visit. This was the big college visit. I was taking him to look things over at Indiana University in Bloomington. I had graduated twice from Indiana University, but I could never go the main campus to attend school in my case others things took precedence. This was the mother ship of everything I had become and I wanted him to feel as I do when I go there.

We set off in my pleasant new pickup truck for about a 50 mile drive to Bloomington Indiana. Knowing the pain I was in my built in some time to stop and ‘stretch’. Which was good since I was stiff as a board when we stopped. Upon arrival I could barely make it to the visitor center, which was a small walk. After a short wait the school organized walking tours for parents and students and I could not go. This is a place I love. Yet I could not go on a simple tour.

Talking to doctors

When I arrived home, I resolved to talk to someone about what was wrong. Within a few months I saw my endocrinologist and I told him I was moving like an iceberg and hurting badly as I did. He ordered tests and I really heard nothing about them. That summer of 2000, I was preparing a complicated school budget and overseeing two school building projects so I did not have time to be worried about a little pain. In three months I saw my endocrinologist again and I asked about the tests.

He did not seem too concerned, but suggested I see this other doctor a rheumatologist to have a look. I made the appointment and when that doctor came into the room; examined me, sat down and asked me what brought me in that day. I said I was very painful and was having trouble walking. His words ring in my mind: “he said I am surprised you can walk at all with this RF factor”. If I had to point to a date when I knew I had RA it was that day.

Telling others

After the appointment Sheryl and went to the car and discussed what we had heard. I was concerned about what to do. I have always been open about diabetes so I would not hide my RA diagnosis. First, we had to our sons, they were both living away from us, the oldest a new engineer in the Detroit area, the youngest at Indiana University (yes, he chooses a dad’s university) and we had to tell my dad who had always worried about my diabetes.

Then I had to tell my employer. I was in charge of big money, and big projects. It was important they know why I was not operating at a peak performance level and what lay ahead with biologics and medical concoctions. That went well enough, my immediate supervisor was happy to know what was going on.

The most difficult to tell about my RA was my father. He was greatly concerned and remained so for the remainder of his life. He encouraged me to seek disability, I did not, and I am glad I didn’t. In 2007 I had to stop working and it was a terrible day for me when I had to quit working, which is a different story.

My RA came slowly. I suppose it always does. But once it arrived it changed my life profoundly. I hope our children, or their children will never have to tell these stories. Now that would be a profound story.

-30-

rick

My wife calls this car ‘The Beast”.  In this picture The Beast is smiling.